How do you learn about a disease you have without scaring yourself to death!?

Monthly Archives: September 2008

Okay.. I’m the queen of optimism here… Anyone who knows me- knows this fact. Since reports came back from my kindergarten teacher in 1973 it was on record. “Smiles, endless smiles. Amy is so happy, she’s a joy to have in class” Now granted.. this was news to my mom being that my home life was different. Ever since my sister came on the scene my role changed. Only 20 months younger than me, she catapulted me from center stage, and I hadn’t even sung my big number yet. So, my shining persona was not evident in the daily family experience. Imagine that.

Years later that sunny disposition and overall optimism “in-spite-of-it-all” has carried me through so many of life’s dire moments. And its that attitude that keeps me going no matter how hard MS pushes me back.

But I’VE HAD IT!!! (as previously stated!)

Of the myriad of symptoms I invisibly juggle everyday… Foot Drop has been an unwelcome repeat offender. To clarify.. Foot Drop is when your foot does not listen to the message to pick itself up~ so, at the all important moment, say when one is taking a step, the toe portion drops down… igniting a trip-stumble-fall scenario that is very unpredictable and usually humiliating.

Walking through the NYC streets and stumbling on nothing does not do much for your cool, unfazed city image. But since I was labeled a “klutz” long before diagnosis… it was not an unfamiliar feeling. I can only imagine how this disease impacts people who were dancers or athletes. For me, however, it was a couple of notches lower on the less than 0 scale of coordination.

And yes.. I’ve got many amusing/pathetic stories of kissing asphalt in NYC. This was one of my incentives for using a stabilizing stick on my commute. It has saved me from many falls since I added it to my routine. When I get to work (at NYU Film school) I walk the halls sans stick. Not because I’m working on a particular image amongst the students… it’s great to be an adult who is beyond caring about those things… but more because I’m comfortable in that space… and have things to carry- rendering the stick inconvenient.

So.. we are finally narrowing in on the story leading up to this interjection!

It was almost time to leave. A student asked me a question that I did not know the answer to… so I threw caution to the wind and walked 10 feet to someone I was sure knew the answer. On my return trip (as it were), approaching the staircase that was situated between the start and end point- I did just that. I tripped dramatically. I was as horizontal as one can be without flying (or sleeping) until I righted myself. I was furious!!! The spectacle of the matter didn’t help. There were many around observing me trip over a phantom item.. and as I pulled myself back up I was standing next to a faculty member who was leaving the staircase and made a light-hearted joke. This would normally have been how I would have handled this exhibition, but this time I was pissed! Dammit! I can’t even walk a circle of 20 feet without displaying my brain defect! And for some reason I wouldn’t laugh it off. I was furious. So, I uncontrollably stated: “You know I have MS right!? This happened because of an MS symptom! I have foot drop! So I trip over nothing!” Poor guy.Talk about being caught in crossfire. It was me and my MS and we were yelling it out for everyone to see… and hear. This particular faculty member is a sweet guy… we’ve always had such a lovely “hello-goodbye-have-a-nice-day” sort of relationship. And now, he found himself in the midst of my tirade of frustration and anger and he remained sweet.

So I left for the day with my stick supporting me through the commute home as I grumbled to myself about how I can’t even walk 10 feet without tripping. I was angry and feeling sorry for myself.

I was diagnosed with MS when I was 20. I never had a period of my life where I felt in control of things. Just as I was leaving my tumultuous teens and embarking on a life of my own… taking over the role of “boss of me” from my parents, I had a new boss. One that appeared unexpectedly and told me I couldn’t do the things everyone else was doing. One that has a job plan for me, but refused to allow me to be prepared for it. And once I got used to my new job requirements they changed. Everything becomes more challenging and my ability to meet the requirements are much harder. But in the end… I always matched them.

Days later it feels like a distant happening. Another story to tuck in to my over-flowing-suitcase under my bed. I’m not sure if being pissed really served me. I think I prefer to be strong and humorous. I suppose that makes this ride more tolerable.

Consumed with many distractions, I wanted to pause and share a poem i wrote when flooded with emotion about having to put my cat Frankie to sleep. Since I started blogging I have found a wonderful coping mechanism, a catharsis in writing. In particular when dealing with loss. (losing someone twice) Be it a person, a pet or an ability- words have more power than I knew when I began this blog-journey.

So without further adieu, my emotions in words, this week.

Being Frank

Waking, a half conscious journey to morning rituals
Shadows that mark places to avoid are in memory only
The loud greeting while the house sleeps need not be hushed

Greenest eyes pleading for who knows what are closed
An unexpected hole opens wide
For the first time
There is no one sleeping on our floor

This week I’m finding myself in a writing rut. I have so much I would like to capture in words, yet nothing I’m experiencing can be tamed. I’ve written pages of text with some wise observations, however they are stuck between excessive conjunctions, misplaced modifiers, and my overused ellipses…

The dizziness that was once extreme, then moderate and ultimately not too bad- is now present again. I’m not sure which word describes its current state… its somewhere in between modertate and extreme.

When I climb out I will post again. Until then I be swimming with the phrases…

I recently read a beautiful piece written by an MS blogging friend about her diagnosis. She drew a masterful allegory comparing her diagnosis to her son’s coming of age Tai Kwan Do blackbelt test.

It got me thinking.

Not only about my own diagnosis, but also about the richness of everyone’s unique story. What a fabric we weave in sharing these stories. I feel like I would like to make this a visual statement. Not unlike the AIDS quilt. Is there a unique way to take these MS stories and weave them together visually, without losing their individual value? Allowing for each story to maintain its integrity yet build something larger.

There has to be a way to do this. I’m going to be thinking about that for a while. And while I’m on the search I’ll think about my diagnosis… and how that works in to this fabric.

Two weeks ago I participated in a NonProfit Boot Camp put together by Craigslist Foundation. You know, the people that have given us access to information (fab sales!) in our community. In addition to getting a lovely dining room table, I can thank them for providing a new level of motivation in getting SoftServe Matters up and running. The timing for this was perfect as I just received a call from the IRS that my application for 501c3 (tax exempt) status is nearing completion.

So, let me take a moment to talk about MS SoftServe, its origins and SoftServe Matters the non profitthat is dedicated to providing meaningful learning about chronic illness on the Internet.

While getting my Master’s in instructional design in 2006, I realized that the problem I have with learning about my MS is universal, and can not only be resolved, but it can also become an empowering tool for all patients with chronic illnesses using the technology of today.

I, like so many at diagnosis, struggled with learning about MS. The anxiety of not knowing what I would be coping with the next day, month, week or year made it impossible to learn more about this disease. Everywhere I looked I feared, Will that be me? In 1988 the Internet as we know it was not yet available. Any effort I made to learn more from the resources that were available back then resulted in paralysis by fear. As a college junior I struggled to come terms with this unknown in between my studies and filmmaking assignments. Twenty years later my struggle continues as a variation on that theme.

While I was afraid to learn about the diagnosis in 1988, the twenty years of living with MS forced me to revisit that emotion over and over again and I continue to do so to this day. As I learn to cope with the changes in my disease, scenarios that may include a future with the symptom de jour play themselves out in slideshow form. I want to be my own best advocate, to learn all there is to know about managing life -not only on a symptom level, but also the disease itself – and all of the scientific advances in treating MS. I want to learn about how to choose medications for the varying symptoms, and cope with their side effects. I want to be the master of the unique disease I have, so I can teach to world around me what I’m experiencing and why its happening. But I continue 20 years after this diagnosis to tread with fear when I need to learn.

The Internet affords us so much access to information, its difficult to remember a time when we didn’t have the answers to things. And while it is a wondrous resource for facts and information (No more social bets of who was that actor? and I think I saw him in the last Woody Allen film … leading to furious page flipping!) trying to learn about anything that has emotional implications is practically impossible.

Multiple Sclerosis is completely unique for every person. That fact is at times frustrating and at times reassuring. Yet because there is absolutely no way to predict what is going to happen to you, (or me, in this case) I am left vulnerable to those possibilities. And that is exactly what is force fed to you when you sign-on to learn something. Every possible consideration is thrust at you, challenging my ability to cope with what I already have on my plate; and making my fears and nightmares more specific.

So, from this ongoing need along side my recent education in instructional design I created an approach that would be the key to harnessing this vast amount of information. It would allow for every person with MS to log in and establish her/his preferences of the what and how s/he wants to learn about her/his disease. The learners are in complete control from start to finish. Creating a safe space for learning about their version of MS. Through scaffolding, as opposed to lists the user will deliberately choose the specifics of the lesson. And once there, s/he will be able to establish and save how s/he prefers to learn.

I know from my experience that I am a visual learner. If I can see a short animation describing a concept it is much more likely to stick with me. That isn’t the case for everyone though, some people prefer to read it, or download and print it. Maybe s/he want to watch and listen to a medical professional describe the concept, or a peer with MS. This site will provide multiple options of how to get the information you are looking for. It will also provide an opportunity to chose the language level that you prefer. (Simple, Everyday Scientific) And the site will go beyond a customized MS education. It will be a space where people can interactively learn how to talk about their version and teach people about that unique experience. There will be a place that demystifies the News about MS, and a space entitled Understanding and Communicating with your Doctor. The site will be filled with powerful tools for managing a life education about MS, such as creating an online space that is individualized– a URL for friends and family to sign on to to learn about your exact version of MS. (Forgive me for what was a pronoun nightmare in that last paragraph!)

For a person with MS it will be a safe, reliable place for information and education…one that is customized to meet her/his individualized needs through customization.

SoftServe Matters is the non-profit organization that will fund this and other sites for a variety of chronic illnesses.

Because coping with a chronic illness is a life of learning. And why shouldn’t we have a place that knows us and works to accommodate our needs; to empower each of us to be our own wise advocate and the educator of all who we come in contact with in life.

It’s a level of control we all deserve when a lack of control is what we are all too familiar with.

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About Amy

Hi ! Thanks for visiting MSLOL Blog. I have over 2 decades of MS under my belt and one of my favorite coping mechanisms is this here blog. Writing is a great way to have control (cmd-X, cmd-V). If only the rest of life were so easily managed. I'd be doing some serious cmd-Xing on my brain! So browse around.. and be sure to check out MS SoftServe. It is about to change how we learn about MS on the web.

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